Progress. A movement forward or toward a place. Progression. The process of developing over a period of time or a continuous and connected series of actions or events. Both words, progress and progression, are always associated with the positive. Synonymous with change and evolution, they are consistently used when we are talking about making something better. Whether its medicine, technology, sports, fashion or art we are always looking to make progress. Looking to make things faster, better and smarter. And with progress and progression comes adaptation. How do we as people change as everything around us changes? Do we accept what is happening? Do we push back and try to hold on to what we know?

Disease progression. The worsening of a disease over time. A concept that is most often used for chronic and incurable diseases. Cystic Fibrosis. A chronic, incurable lung disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. I knew at a young age that it could get worse. I’d seen CF takes its toll on friends. I knew that I was in a way, a ticking time bomb. This is something you live with when you have a chronic, progressive disease. The thoughts, questions and uncertainty. Not sure if you are going to bounce back from the latest exacerbation. Not sure if this lung infection is going to leave a lasting mark; knock down your baseline. Not sure if this hospitalization will be the one when signs of progression, a declining lung function, start to show. The uncertainty that no matter how hard you work, how tough and determined you are, something can happen. That someday something is going to give. It’s just a matter of when.

Right now I don’t feel great. No real explanation as to why not. My life is in balance. I’m compliant with my treatments. I get lots of sleep. Exercise regularly. And in general make smart decisions. But regardless, I don’t feel great. So with that, I went to the doctor last week. Did a pulmonary function test and my numbers were consistent with where they’d been for the past year, down from my baseline. Now, keep in mind my baseline for the first 29 years of my life was excellent, but when you live with a disease that can progressively worsen you don’t want to see any kind of decline. For the past year to 15 months now there has been some decline. Healthy or sick, I haven’t been able to get back to my old baseline. Confusion, frustration, annoyance, and fear are a few of the emotions I’ve cycled through in the past couple days. Not knowing what’s going on or why things are happening creates a level of uncertainty that is not comfortable. It makes you feel like you’ve lost control. That no matter what you do, how hard you fight that it’s out of your hands. It’s not up to you anymore.

But at the end of the day it goes back to the question of how we respond to progress; how we respond to change. While most progress is accepted, this is one type of progression that I’m not willing to accept. These are my lungs. This is my life. Negative progression, decline and defeat. These are words and terms that one day I may have to deal with. I’ve accepted that. I’ve not accepted that day is today. There is still too much I want to do. Too much I want to see, explore and experience. And that’s why I will fight. That’s why we will figure out what’s going on; take the necessary steps to fix whatever is broken and get back on the right path. The path to a long, happy and healthy life.

Keep fighting, Stephen and stop progression in her tracks. You continue to inspire me and so may others every- single- day! I hope that you find answers quickly and that they will provide you with a speedy recovery. Sending our love. Xoxo

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angie

2/24/2014 03:55:19 am

I see the struggles of progression daily while working in the ER. Things seem so unfair. Keep the fight and positive attitude! You truely are an inspiration steve!

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Scott Rosenberg

2/24/2014 04:45:50 am

You, my friend, are amazing and I know you will work your way through this with the bravery and fight that characterize who you are and have always been.

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Patricia White

2/24/2014 05:07:46 am

Steve
I don't know you but I just read your story. I have recently become more informed on CF
Since my daughter's boyfriend, who is 28 struggles with CF since the age of 11 months.
You, like Jake, amaze me! The positive outlook
you both have is nothing short if incredible!
You both have such a fight on your shoulders,
but you were blessed with optimism and grace!
I rarely see those qualities in completely "healthy" people. Good luck with your fight against CF. If I can help YOU in anyway- contact me. You truly have impressed me.

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Joan F.Bird

2/24/2014 05:34:16 am

Steve you are amazing - I wish you well with each step you walk or run....best to you. Joan

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Sheryl Kaufman

2/24/2014 07:29:44 am

You have always been a fighter since you were little and I have no doubt you will continue to fight. We are behind you all the way.

Steve...I'm a 57 yr old, 7 yr post transplant fellow Cfer that fully understands what you are going through. I've had a very difficult strain of CF from birth. I also played many sports and am sure that's the reason I'm still here. Stay active, continue to be diligent with your medicine regimen, and keep fighting. I recently had a book published called " Fighting with Crib Gloves" you might enjoy and even "get" something out of. Tatepublishing.com...download or paperback...easy read...if you do, I would love to talk to you..feel free to contact me. Stay strong!

Stephen even though I follow your progress from afar, every time I read your blog I am absolutely motivated by your strength, thoughts, actions and willingness to share your story to the world. The power of this is immense and well appreciated and inspires people from all walks of life to run their run, walk their walk, speak their speak, dance their dance and share the amazingness and richness of human life. Basically well done make an keep going . Love it... Steve

Congratulations on your bravery and steadfast fight against CF, but most of all on your upcoming award this weekend!
All the best to you!

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About Steve...

My name is Steve Bell. I'm 30 years old. I run marathons. I play soccer. I work in advertising. I read books. I like to travel and go to the beach. I like spending time with my friends and family. I smile, laugh and tell bad jokes on a daily basis. I also have Cystic Fibrosis. It's a lung disease. It's fun. This is my story.